Monday, November 17, 2008

This Verbatim is from a 2003 JAMA editorial by Eric Fombonne, in which he is writing about "claims about an epidemic of autism and its putative causes." More generally, this quote highlights the pervasive success of autism advocacy in imposing the lowest possible standards of science and ethics on autistics:

Yet, ironically, what has triggered substantial social policy changes appears to have little connection with the state of the science. Whether this will continue to be the case in the future remains to be seen, but further consideration should be given to how and why the least evidence-based claims have achieved such impressive changes in funding policy.

39 comments:

I hate seeing the money wasted on behaviorism. There is no way in hell that it's worth the money put into it, versus the actual help that it gives to the child. (I'm not even considering the damage it may do.)

Just how do you justify calling what is patently not autism advocacy, never has been autism advocy, autism advocacy.

That is why I mistrust your ability to advocate for autism because WE are supposed to be the advocates get it?

I don't give a stuff what whoever it is you are ranting on against call themselves.

Why do you persist in this backwards newspeak all the time?

Maybe if you are not an autism advocate you are an autism enemy then? No that doesn't make sense either, so for heaven's sake stop using the term in this ironic fashion. (if that is indeed how you mean it, cos I ain't sure)

in response to R.B., there are major scientific and ethical problems with ABA-based autism interventions. But calling ABA "voodoo" is unlikely to improve the situation for autistics. Instead I suggest treating ABA as the science it is supposed--that is, I suggest applying recognized standards of science and ethics in this area.

In response to Mr Rex, autism advocacy is the widespread effort to make the world as free of autism--of autistic people--as possible.

See this, the first post ever on this blog, and this, for two examples.

I use the term autism advocacy because it is accurate. It is informative about the values, standards, ethics, etc., of those who call themselves autism advocates. It is important, in my view, to have accurate information in order to make better (rather than worse) decisions. There is nothing ironic about that (though my grasp of irony is poor).

Hi Michelle. I respectfully disagree with your assertion that the term "autism advocacy" is accurate in general. I think it's only accurate to the degree that the users of the language we communicate with, share understanding of the meaning of the term "autism advocacy" you connote.

"It is informative about the values, standards, ethics, etc., of those who call themselves autism advocates."

I disagree here as well. Don't get me wrong, I understand exactly what you are saying with your application of the term, and I think I understand the repugnant attitudes your use of the term is intended to convey. I still think it would be more accurate in the context of shared understanding and meaning by the greatest number of users of the language to simply refer to your "autism advocates" as "anti-autism advocates".

I wish I'd had someone to explain to me what autism advocacy was, long, long ago, when I made the serious error of assuming that autism advocacy had something to do with helping autistics.

Autism advocacy is a political term and movement, like "family values." There needs to be accurate information about what these terms mean. In my view, autistics deserve accurate information about autism advocacy organizations, and about autism advocates. Without this accurate information, we risk being harmed.

Pretending that autism advocacy organizations and leaders don't exist does not help anyone. I disagree that providing accurate information about what these organizations and leaders do is wrong.

And I suggest that the major issue here, the extreme consequences of autism advocacy, is being missed.

"In response to Do'C, I need to know in what way my use of "autism advocacy" is inaccurate."

It's not inaccurate to you, me, or many others, but it is to the masses.

The way in which it is inaccurate, is that it allows for the vast majority of the users of the English language to make a literal (and quite inaccurate) interpretation of the term, in the absence of your detailed understanding - an understanding I think I share to a large degree.

That shared understanding may be lost on society at large.

In reality, the shared understanding of the meaning of the word "advocacy" in soceity at large, probably does not apply to those you refer to as "autism advocates" at all. Yes, with your perspective and examples, it's clear what the term means. Unfortunately, I think accuracy in descriptive language is affected by the degree of shared understandings within society.

It is a dangerous misappropriation of the word by the groups who are the furthest from actual "advocacy" - to their advantage. I think I understand your desire to call it for what it is, but society doesn't grasp that subtelty of the concatenated term's new meaning as compared with applying its understandning of "advocacy" as a concept.

Anti-vaccine groups would love to be known as "vaccination advocates", but that would be quite a distance from accurate. Even if they co-opted the term, many of us would see through it, and could ascribe meaning that carries the connotation that communicates the true position of anti-vacination advocates.

HelloThe term advocacy is used in different ways, so you need to say more specifically what you are referring to. I see now what you meant, but when I first read your post I was confused, because where I live, the advocacy movement, which includes autism advocacy, is about helping disabled people stand up for themselves and be heard – it is not about campaigning for cures. Here are some sites to show what I mean. http://www.siaa.org.uk/content/view/14/27/http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=143&a=10325http://www.theadvocacyproject.org.uk/index.html?pid=1

In response to Do'C again, there are autism advocacy organizations and leaders out there. So I write about what they do, complete with sources and so on, so that what I write can be verified. I do not see this as wrong, but as necessary, for reasons I've already given, and which haven't been addressed (see my previous comment).

I don't know of any vaccines-cause-autism organizations which claim to be "vaccination advocacy" organizations. But many such organizations call themselves autism advocacy organizations, with autism advocacy leaders.

In contrast, at least according to Google, the entire National Autistic Society (UK) website is free of the phrase "autism advocacy" (now will Mr Rex rush off to do something about this?).

As I wrote above, autism advocacy is a political term and movement (see this), along the lines of "pro-life" and "pro-family." There is widespread understanding of what these similarly political terms mean, because there has been widespread dissemination of accurate information about organizations and individuals who call themselves "pro-life" and "pro-family."

So it is widely acknowledged (e.g., in the major media) that groups which call themselves "pro-family" are opposed to many kinds of families, for example (see recent ballot vote in Arkansas).

Again, I don't see how providing inaccurate information about autism advocacy can help autistics.

This blog, which is mostly about the science and ethics of autism advocacy (see the banner, which has not changed since day one), has been going along, very sporadically, since 2006, or for more than two years.

For a media story which has factual errors but is accurate in its use of the political term "autism advocacy," see this. There are also some statements about accuracy vs advocacy, some of which can also be found here.

I suggest, again, that the important issue here, the extreme consequences of autism advocacy, is being missed.

"In response to Tinted... none of the links Tinted provides contains the phrase "autism advocacy." So I don't see where the confusion comes from."

The problem is that I did not know that "autism advocacy" is a special brand name.

I was involved with mental health advocacy in the early 1990s and you can say "mental health advocacy" and "advocacy for mental health" - it all means the same thing and is part of the broader disability rights movement. In a similar use of language, I might talk about "self-advocacy" and "advocacy for myself" - that is also the same thing.

So continuing the trend, I assumed that "autism advocacy" and "advocacy for autism" are the same thing. That is why I got confused.

You write:"I suggest, again, that the important issue here, the extreme consequences of autism advocacy, is being missed."

Yes, I thought autism advocacy was a good thing, so I skipped over your post. It was only when I saw the other comments that I realised you were talking about something else.

"Just how do you justify calling what is patently not autism advocacy, never has been autism advocy, autism advocacy."

Huh??

You mean to say that basing policy decisions -you know, funding for good support programs - for adults maybe ( who are supposedly non-existent in this 'epidemic'), on no data whatsoever is a good thing. Look mate, this is as basic as advocacy gets and there's not much of it because there are very few people who can do it at all. So don't get in their way eh?

I like your kind of advocacy, well most of the time but there's no doubt about it - it takes a lot of all kinds to get anywhere at all.

In response to Tinted, see the numerous links I've provided in the comments above. All of them lead to information about autism advocacy organizations and leaders.

I haven't written here about self-advocacy or autistic advocacy or any other form of advocacy. All I've written about is autism advocacy, which is more or less the subject of this blog.

There are many organizations and individuals in the area of autism who are advocating for various things. Many of these organizations and individuals call themselves autism advocates, and claim to represent autism advocacy. What organizations and individuals claiming to represent autism advocacy have in common is their goal and ideal: a world as free of autism--of autistic people--as possible.

In response to Tinted, I don't understand the "turf" (turf...?) bit, you haven't at all bothered me (your criticism was genuine and interesting, which is good), and I see no reason for you to apologize.

How on earth do you deduce that advocacy means elimination and extermination.

If I get an advocate to speak for me and to my cause in court, how is that asking them to condemn me, which is the oppositte.?

I would have called what you do "advocacy" in the sence that most people mean it, but no longer, because of your failure to grasp the concept, meaning that I think you only ever speak for and to your own obsession with one particular argument in the autism debate, managing to cause greater division than healing.

And this is not about the science at all, it is about the politics of it.

You clearly represent a different strand of politics than me, and yes you are by your very acts political, you can deny it, but that is just your own idiosyncratic interpretation and not the facts, no not the "scientific" facts

According to Mr Rex, an autistic should not write about autism unless Mr Rex approves. If Mr Rex doesn't approve, then he responds with personal insults, unfounded accusations, and what-all.

I don't speak for or represent other autistics, Mr Rex included, except when other autistics directly give me this privilege (this has happened).

There is more than one form of advocacy, in autism and in other areas. I've worked to provide accurate, verifiable information about the form of advocacy currently called "autism advocacy" (as it is, not as some might wish it to be) and its consequences to autistics. As I wrote upthread a ways:

"I wish I'd had someone to explain to me what autism advocacy was, long, long ago, when I made the serious error of assuming that autism advocacy had something to do with helping autistics."

I think Larry is out of it if he thinks Harold Doherty and Michelle are two of a kind.

That said, I really don't like this relinquishing of terms that we can no longer use. First we find there aren't autism advocates that advocate for autism. Now it appears that autistics and allies are not part of what is called the autism community. What's next? Can we still use the word "autism"?

Who says advocacy has to be exclusive to parental groups? Self-advocacy is advocacy. Let's not get confused and sidetracked on syntax and pedantic literalism.

If I fight for my rights, in ways I am my own advocate.In ways, Estee Wolfond is an advocate too - parent with a different viewpoint than Mainstream Parent groups.SO let's not generalize about accuracy. And such things linguists worrying about rootwords and such should be left to them. Viewpoints cannot be supported with studies when some terms are fluid and are subject to change dependent on the era and on the person using it.The personal is political.

I dunno I just spent all my life preoccupying about HUMAN Rights (Amnesty) even before we had a diagnosis - before it was in the book.I have a political science background so the origins of advocacy/activism trumps the "re-introduction" of autism on the scene. Autism is only one of the latest civic movements.Within movements , there not all hetreogeneous. The Advocate - Gay magazine is written by and is for gay people.Aren't we all advocates every time we write a letter to the editor, denouncing something?Please don't relinquish your past, yourselves in this conundrum of "appearing" bias-free. Many shades of autism, many shades of advocacy. This black and white thinking will get us no where.

If it matters, I have always understood what Michelle means by "autism advocacy," particularly in this context. And I do agree with her assessment of the situation.

At the moment, perhaps it is best to use "autistic advocacy" for the work being done by autistic people and their allies - the advocacy that actually takes into account what autistic people really want and/or need.

I find it incredibly sad that policy is so easily influenced by unscientific information. I wish it were easier to correct the mistakes. It might be possible, but we'd all have to agree on terms first, I think, and that may well not happen for a long time.

I'd get it if Michelle Dawson talked about the curebie movement as 'autism advocacy' in quotes, but the real autism advocates are people like Michelle Dawson and myself who advocate for autistics to have power to decide how we are treated. I don't think a term should just be tossed out because many people misuse it.And Laurentius Rex, don't you dare insult all Canadians based on only a few people. That's discrimination.

Yes I guess I am by implication casting aspersions against my own Canadian relatives.

There are two points I hold two, the first is that Michelle is attracting ridicule by using the term autism advocacy to mean the opposite of what it means elsewhere, and anyone who understands the term advocacy in relation to any other movement would see the bizarre anomolay of Michelles usage.

I cannot take Michelle's "advocacy" seriously if she uses the term in an ironic sence whilst meaning it dead literally :(

I used to be a member of a mental health advocacy group, everyone understood that to be a group who advocated for the rights of compulsoraly detained mental patients to a fair hearing under the tribunal system, providing advocates and legal advice. How would Michelles usage hold the meaning she give to it in that context then?

The second point is that Michelle in using the term in the same way as it appears Harold Doherty uses it, invites comparison with him.

It is important that we continue to call ourselves advocates, yes autism advocates, autistic advocates. We are not here to concede defeat just because a small and bizarre group within a much bigger world use the term in a pejorative or negative way.

I will continue to appreciate the pragmatic work that Michelle does in creating positive realistic perceptions of autism (so long as her science is good, and it isn't always) but I will not consider her an ally so long as she persists in these anomolys, they go beyond what I consider acceptable, and that's the way it is.

Michelle you do not ever state the so called obvious, you create it out of an environment unique to your situtation and upbringing and indeed so do we all, even the Wrights of this world.

I was doing some thinking today (my neurology actually allows that on occasion) and came to the conclusion that it would be hard for the Wrights, and the Doherty's not to be who they are and to pursue the objectives and hold the attitudes they do.

Think on this, it's tree time again.

Do you know Oak trees? well in England there are many magnificent wide girthed and gnarled solitary oaks, but that is not how they would be if they had grown in a forest of nature, they would have been tall, and canopied.

Now when an oak is a thousand years old and is either gnarled or alternatively tall in an ancient forest (and few of them exist any more) what can you do to change it to be what it currently is not.

We grow in different environments, and those who do not forgive us our trespasses as it were, are really like an ancient oak, a product of a different environment to you and I, a different economic and social environment, and what can we change about them?

Not a lot.

Thing is you and I might be aiming at the audience who can be changed but you just are so crap at it because you are unchangeably within your own destiny which seems to cross mine, and it makes me cross too.

We both want the same, but you don't have the first idea what it is all about.

There is a science of politics, but you with your not so very hard science in itself reckon that, that (your flimsy autism science) is all there is, but I know it ain't.

Unlike Mr Rex, I'm not capable of politics. I'm not sophisticated enough. I don't have or understand ideologies.

I do provide information though. Some information is more accurate than other information, and at any time, there are ways to verify this. Some ways of finding things out and of making decisions are better than other ways. This is regardless that all human beings are wonderfully flawed, and that perfection is unattainable.

Also, I take the risk of testing ideas, in more than one way. Using the methodology called science, this means that what my collaborators and I have done is transparently described, flaws and all.

This allows for others to come along and further test these ideas, possibly finding them valid or maybe finding them too flawed to be useful. And it is possible that some further tests of these ideas will themselves be too flawed to be informative. This happens in science all the time.

Some work I've been involved in has been replicated by other groups (e.g., Hayashi et al., 2008; Sheppard et al., 2007; Ozonoff et al., 2008; Keehn et al., in press). Some may eventually not be, as more knowledge of various quality and reliability accumulates.

Allowing for knowledge to accumulate, and for this knowledge to go in the direction of more (rather than less) accuracy, requires that ideas be tested. This is what I do.

I have also tested ideas (which would then be called claims) through legal proceedings. Possibly, it is easier, less stressful, etc., not to test ideas. But in the case of legal work I have done, I did not have much choice. In the case of research, so long as it is at all possible, I will do my best to contribute something.

I have at least the honesty to declare against those who I do not think are advancing the cause of autistic freedom and autonomy.

Michelle is mired in an environment perhaps not of her own making, but she is a lost cause ultimately, Clay is even more lost.

Yeah and the more you decry me, the more you despise me the stronger I get, and the point you don't realise is that I am fighting for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

'Advocacy' as far as I'm aware is a neutral term. An advocate speaks on behalf of another, there is no implicit suggestion of the advocate working for or against them, only in place of them.

An advocate fighting for a person's right to die without knowledge of their preference is as much an advocate as one fighting for their right to live without knowledge of their preference. There's no regard to right or wrong in the word 'advocacy'.

In most places, most Autism advocacy is bad. Not all, but most. Does anyone but those supporting this bad advocacy dispute this? Claiming it is not advocacy just because it is harmful does not make it non-advocacy.

I honestly never had anything against you, until you began sniping at me, a couple Octobers ago, over the significance of a movie I'd said I'd liked, "The Boy Who Could Fly". And you were wrong about the movie. I doubt you ever even saw it.

"I have at least the honesty to declare against those who I do not think are advancing the cause of autistic freedom and autonomy."

I think you're kidding yourself about your motives. What I see is a pitiful attempt at self-aggrandizement - you think you can improve your image by criticizing others, Temple Grandin, Stephen Shore, Michelle, Kev, me, the whole freakin' Hub.You think that by criticizing others, you somehow elevate yourself at least to their level. That may fool some people, but not those with any discernment.

"Michelle is mired in an environment perhaps not of her own making, but she is a lost cause ultimately, Clay is even more lost."

The only "issue" here is that she refers to "autism advocacy" in the same way it happens to be used *in Canada*. It's used pretty much the same way here in the US, by what *should* be called "anti-autism advocates". We can't stop them from using those terms, but we can at least *try* to understand each other.

"Yeah and the more you decry me, the more you despise me the stronger I get, and the point you don't realise is that I am fighting for you!"

I haven't "decried" you, I only said you were being obtuse, then later said that we could all be that way sometimes, but that you were probably better at it than others. (That was on LB/RB Team, "I Object part 1".) No despising there, just pragmatic assessment.Oh, and bringing you into it was only *incidental* to making my point.

As for "fighting for me", save your strength. I've already fought all my battles, as I retired a few days ago. I'm not even filing for Social Security benefits yet, as I'll get much more if I wait until my next birthday, next July. I'll be *fine* until then. So I'd say I've done pretty well, considering.

So what if I do criticise people now and then no-one has died from it yet (and that includes me)

It's not as if people do not criticise me back is it?

It's a way of doing things, a bit adversarial, I'll grant you, but that is rather the nature of Politics, whether you be on the left or the right.

Ok I am being a bit unfair on the whole of Canada, so I will just confine myself to Punch and Judy aka, Michelle and Harold then.

As for Michelle, your own science can deconstruct you ruthlessly so beware !

Political science is a methodology, as the methodology can be employed to practically any endeavour even throwing dice (particularly throwing dice)

Michelle you are not the paragon of logic you think you are, I can see through it!

and of course, Clay, you can see through me perhaps, but not see into me, that is the property of transparancy, not what it seems :)

Whoever said we always had to agree with each other, or even like each other, that is what makes autism advocacy something real, because we are individuals, each of us real people with differences as well as similarities.

Perhaps I have bandied the term enemy about too freely, but hey, don't anybody ever flatter themselves that they can't be my enemy, if only for a day :)

Science is the villain of the piece, because all sides appeal to this supposedly neutral arbiter in there arguments in the same way as the mediaval warrior appealed to God.

It ain't necessarily so, and it never was.

Can science be on anybodies side at all, not according to my reckoning, because science is the possibility that you may be mistaken.

Larry said:"So what if I do criticise people now and then no-one has died from it yet (and that includes me)"

This is "so what" - you said earlier:"Sorry Michelle, you are out of it now. You don't speak for me, and I do not want you speaking for autism at all. You speak against autism, because of your distortions."

My reaction was, "Where in Hell do you get off declaring anyone (especially Michelle), "out of it now"? YOU don't get to say who speaks and who doesn't. The distortion was all in your head, failing to translate from Canadian to British, and lacking common sense to know what her objectives really are.

It did serve, however, to prove that you are "full of yourself",(Please google it if that doesn't translate the same in British.)

Does the fact that "no one has died from it" excuse what you do?I'll let others decide for themselves. Reading between the lines, I can see that you're actually trying to be amenable here. But I think a full apology is warranted, because it's really bad form to go to others' blogs and give them such a public dressing down, or tongue-lashing, as you have done here.

Name-calling, the dissemination of false information, personal attacks, etc., aren't criticism and aren't useful or interesting (however informative they are about those who carry on this way). In fact I find them boring, irrelevant and mostly pointless to respond to.

Clay nothing excuses what you are missing in all of this, except of course being you and me being me.

You can rant as well as me, but let us see where it leads, say what you like but I have made some progress in this world so far as changing things and that because I am a bit of a "rough diamond" at times.

You don't have to like me, and of course I am what I am, and whatever I am full of, I can tell you that if I were not, I would not either be myself, nor would I have achieved the things I have against the odds against me.

Actually Clay if I owe Michelle an apology for anything it is for berating you on her blog, and probably likewise in reverse.

This blog is really like a Punch and Judy show at times, I suppose sanity will return when it is just Harold Doherty and Michelle having a go at each other, our own seperate Punch and Judy show doesn't belong.

Let's get right back to the original point, never mind the personalities, the bluster, the rest of it.

Michelle is using the word advocacy in the wrong context and in my opinion (overinflated or whatever you want to call it, it is still my considered opinion) that is doing all our autochtonous autistic causes no good whatever.

But I have bigger fights right now, the autism "establishment" certainly does not want me as a member either. If Michelle were to have characterised her adversaries in Canada as the autism "establishment" it might make more sence, but prepositional autism advocates they are not, they are self advocates of hate.